Tuesday, August 25, 2009

Dancing Queen

I am thinking about putting Ella in a special needs dance class. This isn't the class, but it's a good example of what it will look like. Joe and I watched the clip from the Today Show and were both crying. It's amazing how it just hits us that Ella's life and future is so different, and that there are struggles we don't even know in her life. I tow the line between wanting her to be cognitive, and not wanting her to know what she's incapable of doing. Now, for my mother-in-law, I'm NOT saying that Ella won't be able to do a lot of things or that God can't heal her or even that there aren't a great deal of things that Ella CAN do, but this post is about dancing. Yes, Ella shakes her shoulders...it's adorable, rare and precious when done. When having a daughter I think it's hard not to picture pink tights and leotards and tutus...I mean, it's part of being a girl. You want to be a princess and a ballerina and a if you live here, a Dallas Cowboy Cheerleader. They are all fun to dress up like for Halloween and pretend when you play make believe. I want those things for Ella, and yet I have NO idea if she wants them for herself. I know, there will be those of you who think I should just let her be a little girl without making her do all of those things, but to me, that's PART of being a little girl.

So, we are considering putting her in classes and just letting her tell us if she enjoys it or not. We won't know till we try and we have to be sensitive because it's not like she'll just look at me and say "I love it" or "I hate it". Communication is a huge issue around here right now.

Sunday, August 23, 2009

Submission and Decisions

Submission:to give over or yield to the power or authority of another, to present for the approval, consideration, or decision of another or others, to yield oneself to the power or authority of another.

In our marriage it has always been wonderful to be able to depend on Joe. I trust him to prayerfully lead our family as God leads him. Wives, submit to your husbands, as is fitting in the Lord. Husbands, love your wives and do not be harsh with them. Colossians 3:18-19 It's been really easy for me. I can't explain why, but I trust Joe so deeply that I allow him to make our decisions. Sure, I will ask him why or discuss the reasons we do or don't do something, but it always comes down to what he thinks is best for all of us. This isn't always easy. Joe and I are VERY different. I always want to be part of EVERY social event, and Joe rarely cares what we are involved in socially. I like to be out and about and around people and doing things...Joe likes to be home, with us...just the 4 of us...our family.

Why am I telling you all of this? Well, Joe and I have talked a lot about whether to start Ella in school tomorrow. It's supposed to be her first day. Who misses their first day of school? It's like the best day. You get to wear new clothes and get all dressed up and everyone is excited and nervous. However, because of our past week, Joe thinks it's better if she waits a week. For some reason, that is really hard for me. I do realize it's about Ella, but I see her as totally back to herself. She's a little clingy, but I think that has so much to do with the fact that she's had someone right next to her every moment of the last 5 days. She's been held, and sung to, and talked to and visited...every moment of every day. So, we are going to give it another week. I'm going to allow Joe to make the decision and follow his lead.

Submission in our family isn't about Joe being in "charge"...it's about me, allowing Christ to lead our family through Joe.

Saturday, August 22, 2009

We're Home!

Ella and I came home yesterday afternoon. I wanted to let you know that and I will update with more details later.

Thursday, August 20, 2009

some verses for this week

Beloved, do not be surprised at the fiery ordeal among you, which comes upon you for your testing, as though some strange thing were happening to you; but to the degree that you share the sufferings of Christ, keep on rejoicing; so that also at the revelation of His glory, you may rejoice with exultation. If you are reviled for the name of Christ, you are blessed, because the Spirit of glory and of God rests upon you. 1 Peter 4:12-14

For though we walk in the flesh, we do not war according to the flesh, for the weapons of our warfare are not of the flesh, but divinely powerful for the destruction of fortresses. We are destroying speculations and every lofty thing raised up against the knowledge of God, and we are taking every thought captive to the obedience of Christ. 2 Corinthians 10:3-5

Be anxious for nothing, but in everything by prayer and supplication with thanksgiving let your requests be made known to God. And the peace of God, which surpasses all comprehension, shall guard your hearts and your minds in Christ Jesus. Philippians 4:6-7

Wednesday and Thursday pictures

Update @ 4:56pm (Thursday)

It may be interesting how long it takes me to write this out...I'm home with William. Ella is doing great. She "talking" and moving around and even stood up in her crib today. She gets tired VERY easily and crashed out for a nap today for 2 hours...she isn't much of a napper so I knew she was worn out. Results: a UTI (urinary tract infection). The bacteria is e.coli, but they aren't really sure what the next course of action is going to be. Unfortunately the seizure meds don't help when it comes to febrile seizures....so we feel a little helpless right now. We still have more questions than answers. We wanted to make sure we knew what the cause was...and PRAISE GOD, we do. Now we just need to pray for wisdom as the doctors decide how to prevent it from happening again. They are still running tests on the bacteria to see what it's sensitive to, which antibiotic to use, so we'll be there till tomorrow. We are also finding out how her body is reacting to the seizure meds. I hate her being on them, but they will prevent any other kind of seizure, and the neurologist thinks that's best...Joe and I haven't gotten to talk much about any of this. Questions? Ask away. I'm not sure I wrote everything out, but I'll be very happy to fill in the blanks. It's hard to process and remember all at the same time.I think I'm staying up there again tonight, so I'll try and upload pictures.

Update @ 11:18pm (Wednesday)

Yep, you read that, it's after 11, getting closer to midnight as I write this. So far we still know nothing. Ella's CAT scan and EEG came back with the same abnormalities that they've always had on them. Her white blood count wasn't crazy when they got the CBC results, so it doesn't look like her body was fighting infection. I learned that febrile (fever induced) seizures are not about the temperature, but about the speed at which the body heats up. If your body goes from 98.6 to 102.1 in 30 mins it can cause a seizure, if it goes from 98.6 to 104.0 in the matter of 12 hours then it may not cause any seizures...just thought I'd give you some little bits of information I learned today. I can't sleep. Mainly because it never really gets quiet and it's really hard to sleep in the same room with Ella...how parents sleep with their children I will never understand. Every noise and motion makes me sit up. She tends to roll around a lot and get all tangled in her cords...or get her leg or arm stuck outside the crib. There isn't really a better alternative, except her bed. It's amazing, but her bed at home is the ONLY safe bed for her...I'll remind myself to post pictures and explain why at some point..not tonight. I've talked to God a lot today. I want to say that I've prayed a lot, but my mind wonders, so I've been doing better with just conversations...I realize that conversations and prayers can be the same...but I feel a difference. It started out with a silent prayer that they not really be seizures as I went to her room this morning, then out loud prayers to make the seizures stop, then thanksgiving that they got them under control, then and now...results, answers, but first, sleep. I'm anxious that they will have no real news for us tomorrow. That we will go home with the same info we had last night...try to prevent, both UTIs and the seizures. We have been on preventative meds for both...and yet here we are. I read of so many families that struggle with DAILY seizures...I just can't imagine that being our "normal".....although, I'm sure most of you wouldn't want to consider my life your "normal" either. Today I feel numb. I've cried more from watching my husband's heart break over his daughters pain. I just can't process that we are here again...waiting for answers...hooked up to machines...and not going about our fun, but over-scheduled, lives. Please pray that we will have wisdom as we ask questions, receive answers, and make decisions about Ella's future. I'm not sure I can write how much your prayers and notes have meant to me. It's amazing that a website like this can incite prayers around the world. I appreciate your prayers and pray that you will receive God's blessings as you intercede for our family."Consider it all joy my brethren, when you encounter various trials, knowing that the testing of your faith produces endurance and let endurance have it's perfect result, that you may be perfect and complete, lacking in nothing." James1:2-4

Wednesday, August 19, 2009

Update @ 1:48pm (Wednesday)

So, you probably would like to know the story so far. First thing, we don't actually know anything yet. No cause and no diagnosis...hopefully soon.

At 5:00 this morning I woke up to a noise. I checked outside and didn't see any bad guys so I decided to go back to bed. I just kind of laid there and then heard noises coming from Ella's baby monitor. At first I just assumed that she had woken up...she tends to wake up and play and then work herself back to sleep. After laying there for a few minutes I realized that the sounds were more like wimpers...and it sounded similar to the seizures we had experianced back in April. I went down to Ella's room and walked in and knew, in my heart and in my mind, that we were back to that place. She was seizing in her bed. People have asked what kind of seizures they are...I don't know the name, but I can give you a description. Her whole body is tight and she's in the fetal position with her arms in front of her (on her side). Her eyes are open, but looking off to the side and it's like she can't find me. She jerks about every 1/2 to full second and it never stops...today they were almost 30 minutes that we saw full seizing. So, shouted in the baby monitor "seizure" to Joe and then realized that may not have come across clear. So, I left her and went down and shouted to Joe "call 911, Ella's having a seizure"...I didn't even wait for his reaction. I went back to get her. It's so hard to pick her up when she's like that, but even harder to put her down. However, we were told last time that we can't hold on to her when she's like that...so I set her down on the living room floor. Joe and I took turns talking to her, praying with her, and singing songs till the ambulance arrived. We both got dressed during all the craziness and got her seizure meds (like an epi pen) in her to try and stop everything. The paramedics arrived, they do all of their medical stuff and then we head to Medical City in the "bus". Kristie came over (God bless Kristie) to watch Will (yes, at 5am!!) and Joe met us at the hospital within minutes of us getting here. At least the paramedics got her seizures under control before we got to the hospital.

As of now we've had a CAT scan, chest x-ray, EEG, tons of blood and liquid tests, and I'm not even SURE what else. We are waiting on her nuerologist and pedi-ICU doc to tell us what their thoughts are at the moment.

I will try and keep you updated.

Tuesday, August 18, 2009

Train Experiance Take:1

We went downtown to Union Station to try and see the "A Christmas Carol" train and experiance...after learning that it was an hour and a half I decided we would look around and then I would bring the kids back the next day. I'll let you know if we make it through and what all the hype is about. We also got to see the TRE (Trinity Railway Express...from Dallas to Ft. Worth) and William was in train-heaven.

Do all children eat crayons?




Enrolling in School

Ella and I went up and finished up enrolling her for PPCD (Preschool Program for Children with Disabilites) in Richardson Schools. We are SO excited!! Stay tuned for Meet-The-Teacher night and her first day of school.

Lake Day w/ Friends